bone marrow transplant

Post here for ANY bone marrow transplant related issues

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Nigel

Re: bone marrow transplant

Postby Nigel » 09 Nov 2009 19:09

Hi Jules
hope you have access ... actually you must have to have posted this ... silly me.

Hope all is going well for you ... guessing you are in isolation?

At Kings the food was lousy (tho improved now I think) how is it the food Addenbrookes? Seems mundane, but food is pretty important - and here's a tip ... if you end up shrinking because you can't face the food, ask for some of the high-calory drinks ... chocolate was my bete-noir! AND M&S jellies and fresh pineapple!

Guessing your undergoing chemo / flag, and a hickman line? Keep cheerful, it really does work (I'm embarassingly well now)

If you send me a private message / address, I'll dig deep and send a get well soon card!

Really wishing you well

Weather is lousy down here ... foggy and cold, so you're in the best place

All the best
Nigel
nigem
Posts: 13
Joined: 04 Jun 2009 15:11
Contact:

Re: bone marrow transplant

Postby nigem » 09 Nov 2009 19:21

Just wanted to say all the best, and let us know how you are doing. If all goes to plan husband will be 'doing time' next year in Kings.Gem
whiskers
Posts: 19
Joined: 31 Mar 2009 15:41

Re: bone marrow transplant

Postby whiskers » 10 Nov 2009 15:17

Hi Jules
May I wish you all the best luck and hope in your treatment, I am sure that the outcome will be worth all of the difficult weeks ahead, and wish you a speedy recovery.

As for myself, I have just had a nasty FBC result at my local clinic at Canterbury, showing that my MDS is worsening. My neutrophils have dropped dramitically (3.2 to 0.59) in a couple of weeks, also my haemaglobin levels have fallen to 6.4 despite having fortnightly blood transfusions of 3 units at a time. My FBC ten days ago were so changed that I had to have an immediate same-day Bone Marrow Biopsy, I will hear the results tommorrow, so fingers crossed. If they have deteriorated dramatically then I will have to go onto a programme of chemotherapy immediately, I hope this is not the case. I am awaiting a donor for a mini-transplant at the moment via Kings College, London, but do not expect this to happen until about March 2010, as I always have severe chest infections during the winter months, however, I do not want to have chemo treatment that may effect this chance of a transplant unless I really have due to severe deterioration in my present condition! Oh what fun it all is, I am sure you have been through all of this already so you know how it affects ones phsycologically. I know it is doing my mind in at present.

Anyhow, that is enough of my problems. Please keep everyone up to date on the forum, as we need to know how you progress, to measure our own problems. I am sur you will sail through this with flying colours, and at the end of what must clearly be an ordeal, you will come out a new man. I will pray for you, as no doubt will others. Have the very best of luck in your treatment and be an insperation to us all.

All the very best wishes,

Whiskers (John)
Terence
Posts: 3
Joined: 14 Nov 2009 11:02

Re: bone marrow transplant

Postby Terence » 14 Nov 2009 11:53

Hi Sophie and Nigel
Just to introduce myself I’m Terry, Jules partner/fiancé

Thought you might like to know the pivotal day (The Transplant) has passed and would have been an anticlimax had she not reacted the preservatives added to the cell compound.
She is asleep now for the third day and all at least for now is well as I can only look on with for more anxiety than I could ever imagined. Had thought to join the site earlier in order to talk to other carer/partners and now wish I had. If there are any of you out there please get in touch, I now have a few answers but also some questions on the day to day post op care.
NIGEL You may have guessed in answer to your question, that we are on line up here on the 10th floor of the Hotel Addenbrookes. We are also permitted mobile phones and have free telly provided by a care trust associated with this ward.

Will try and keep you posted. I'm sure Jules will be in touch soon as.
Terry


Nigel

Re: bone marrow transplant

Postby Nigel » 14 Nov 2009 18:06

Hi Terry
must be such a tough time for both of you.

For me thing just got a little better each day after the transplant, slow progress at first but a 'cure' to look forward to in the distance.

Please wish Jules well from us when you can, and keep cheerful the two of you!

If it is any help, Maureen (my stalwart support through it all) or I would be happy to chat on the phone; if you want send me a message and I'll return our number.

Wishing you the very best, and please keep us posted

Nigel
Nigel

Re: bone marrow transplant

Postby Nigel » 14 Nov 2009 22:15

[quote=Terence]Hi Sophie and Nigel
Just to introduce myself I’m Terry, Jules partner/fiancé

Thought you might like to know the pivotal day (The Transplant) has passed and would have been an anticlimax had she not reacted the preservatives added to the cell compound.
She is asleep now for the third day and all at least for now is well as I can only look on with for more anxiety than I could ever imagined. Had thought to join the site earlier in order to talk to other carer/partners and now wish I had. If there are any of you out there please get in touch, I now have a few answers but also some questions on the day to day post op care.
NIGEL You may have guessed in answer to your question, that we are on line up here on the 10th floor of the Hotel Addenbrookes. We are also permitted mobile phones and have free telly provided by a care trust associated with this ward.

Will try and keep you posted. I'm sure Jules will be in touch soon as.
Terry


[/quote]


Hi Terry

Must be really hard just watching and waiting; think it's sometimes harder than actually going through it yourself.

Keep your spirits up and stay strong for Jules; you're the rock on which she needs to lean.

Stay positive, you've both come a long way; we're three years down the line now - it is a long slow journey, but certainly worthwhile - sometimes seemed like one step forward and two back - you will get there.

Thinking of you both; if you would like to chat please let me know and I'll email phone number to you.

Our thoughts and best wishes are with you.
Maureen
nigem
Posts: 13
Joined: 04 Jun 2009 15:11
Contact:

Re: bone marrow transplant

Postby nigem » 16 Nov 2009 17:54

Hi Terry,I can imagine how scary it all is, and expect I will be in your position soon. Keep us all informed of Jules progress, and send her positive thoughts from me,
Gem
Terence
Posts: 3
Joined: 14 Nov 2009 11:02

Re: bone marrow transplant

Postby Terence » 18 Nov 2009 10:02

Julie is doing well, she has pretty much slept for the last four days Fortunately there is an open ward policy and I have been able to stay in the room but she hasn’t wanted too much light or sound so I cut back on tapping a keyboard and that’s why I haven’t b been on line. She reacts unfortunately to something in the blood during transfusions which causes sever headaches and vomiting. This is not exceptional apparently and she now has to have preventative.Her nutrophils are now at zero and I’m being constantly reminded by the staff that they are expecting an infection almost as a matter of course. One of the nurses put it that she could pass on an infection just by looking at a patient. Julie has now had her last chemo and as she puts it She has got her head back. All we have to do now is sit and wait.
I haven’t had much of a wonder round the site yet, is there a way of discreetly leaving a phone number or do I just leave my e mail?
John, I’m sorry to hear that your levels are dropping. There was a lot of talk about pre opp chemo for Julie if this transplant couldn’t take place for any reason. There was also mention of a relatively new treatment in London to stem the tide so as to speak. Julie is the one to ask about that as I think she looked into it a bit just before we came in.

All in all Its smiles from Addenbrookes today

Terry
o:)
Nigel

Re: bone marrow transplant

Postby Nigel » 18 Nov 2009 10:42

Hi Terry
this is good news, just hoping the infections stay at bay. From zero nutrophils I was back to an acceptable level in 14 days and discharged then ... so maybe not too long to wait.

If you want to contact anyone directly, you can use the PM (post message) button at the bottom of a post.

Or look at the members list (click members top right) and pick a user, you will see another PM button there.

wishing you both well
Nigel

Terence
Posts: 3
Joined: 14 Nov 2009 11:02

Re: bone marrow transplant

Postby Terence » 21 Nov 2009 11:54

Hi Sophie and Sharon
Good to meet you yesterday and put faces to names.
I almost didn’t go thinking that after a year since Jules was diagnosed, there couldn’t be much more to learn about the disease, I was wrong, any of you out there not sure weather to attend a Patient Forum, I recommend that you go. I wish I had arrived earlier if only to meet people but as Julie had developed a slight infection in her tummy (due to the injections) I wanted to wait until the docs had been before leaving.

Short course antibiotics have been prescribed and Jules Is looking and feeling good all be it a little tired.

I was asked about the facilities here at Addenbrooke's for carers and relatives.
There s a hostel on sight with the basic amenities. Access was denied for the first night due to a mix up with the key. This may have been avoided with hindsight. I perhaps should have taken 5 mins to check the facilities. While some time was put into Julies needs, packing the largest suit case we have with clothes and various amusements, for some reason I must have thought I was going to get away with little more than a toothbrush and a news paper. There is a basic 4-channel telly but no radio Internet access cost £20 per month but the instructions on how to access it are given on the computer when you switch on and for the most part the lap top was with Julie so it was 2 weeks before I sorted it out.
I was asked, ‘I think it was Phyllis’, at the forum, what improvement might be made and having discussed It with her I am expecting a licensed bar Sky sport and the pool table to be installed by next week.
An accompanying leaflet is being discussed, I suggest that in my case it should be in the style of Janet and John with lots of pictures, as I don’t think I was the full shilling prior to and arriving at Addenbrookes.

Julie will be in touch later to day so I let her bring you up to date with things.

Neil and Julie. I was good to meet you. When are you coming on line? Keep in touch.

All for now from Hotel Addenbrookes.

Terry

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